I received my RCN Fellowship in 2014 for my contribution to nursing care of people with dementia in the NHS, in care homes, through policy work in government and as a university professor. Nowadays as a carer myself, I am a member of a dementia carers support group where we share information and safely express feelings. The themes are surprisingly similar, even though every family is different. A lot of it is about difficult family relationships. Understanding this is important to all nurses, not just those in dementia care.
In my experience, carers of family members with dementia face a particularly difficult set of circumstances. I often talk about the contrast when someone is suddenly diagnosed with, for example, cancer. From my own recent experience of diagnosis, it was followed by opportunities for family members to rally round. Treatment and care are free (at least in the UK) and most of it is undertaken by often very highly trained multidisciplinary NHS staff, so the family can focus on emotional support or practical help. Cancer can be time-limited as in my case, with hope for a cure or remission. If fatal, a hospice or hospice-at-home may be seen as a blessing and is free, paid for by a combination of NHS and charitable funding.
By contrast, there is no cure for dementia: it is always fatal. People with dementia continue to have access to primary and secondary NHS services for treatment and care of other conditions they have or may develop. However, care that is needed because of their dementia, whether that is residential or at home, is ‘means tested.’ This means that this care must be paid for by the person with dementia until their assets have fallen below a certain threshold (currently £23,250). Their ‘assets’ are what they have in the bank and/or the value of their house if they own one. If residential care is required – and the majority of people in care homes have dementia – the cost is eye-wateringly expensive. As much as £1,400 per week is not unusual for a care home. So, the whole thing is different for a person who has dementia, and for their family, because of the burden and worry about care costs.
The person who has dementia and is still living at home may well be in denial or lack insight and so may refuse to accept “outside” help, which denies that support to their family carers who then can become exhausted. Due to stigma, a carer often hides their burden of care at great social, psychological, physical, and personal financial cost. The carer themself might be a frail and aging spouse; and if they die before the person with dementia, grieving children sometimes inherit this demanding and emotionally complex task. Ultimately, a care home is represented as a failure, not a blessing, by many people. People apologise to me and say, “I’m sorry I couldn’t manage it.”
Inequality of workload among family members is common. It’s worse if siblings challenge care decisions. The main carer might propose a care home and others veto it because they’d “promised it would never happen”. Tensions can rise. The main carer may suggest that they are being sacrificed to preserve family wealth for legacies. Bitter arguments at this time can lead to lifelong animosity. Because I am called in to help families with these difficulties, I might overestimate how often it occurs, but it seems a lot to me. Maybe we need research on this?
Thinking in advance and discussing with family members about powers of attorney, and directions about death and dying, confers hope of managing potential disputes. As a nurse you need to know where to signpost people to this and set an example by doing it yourself. Working together is complicated if any family members are in denial because of differing understanding and knowledge of what dementia is. Family members can have different views about care giving and their respective expected roles. The relationship between parents and adult children may be quite different for each child depending on their birth order, gender and geographical proximity. Sibling relationships are complex. Those in denial may be traumatised by finally appreciating the reality, just when the main carer has no empathy left to offer. Planning ahead can help ward off angry exchanges at this time.
Close carers have lived through years of dealing with changes in behaviour in the person with dementia, bringing alterations in their relationship which others could not see. After a crisis like an acute hospital admission, if other family members take a closer interest and start to involve themselves in decisions, it can cause resentment about them “interfering” rather than be seen as helping. The carer’s physical, psychological and social stress increases as the behavioural and psychological symptoms of dementia worsen and eventually get noticed. This overdue interest is not always seen as supportive but instead it can increase resentment.
What can you do?
They tell me you can only begin to understand or help when you have personal experience, which limits what you can do from a professional standpoint. However, rather than taking the burden on yourself, refer the family on to those organisations that are ready and waiting to help. One thing they can help with – or you can do yourself – is to locate a local dementia carer support group for any dementia carer you think might find this helpful. A local carers’ group provides an outlet for strong feelings that could destroy family relationships and make carers ill. If there is not a local group, you could find a room and get one going. The carers together will do the rest themselves because they are already experts at getting things done.
In my experience, carers of family members with dementia face a particularly difficult set of circumstances. I often talk about the contrast when someone is suddenly diagnosed with, for example, cancer. From my own recent experience of diagnosis, it was followed by opportunities for family members to rally round. Treatment and care are free (at least in the UK) and most of it is undertaken by often very highly trained multidisciplinary NHS staff, so the family can focus on emotional support or practical help. Cancer can be time-limited as in my case, with hope for a cure or remission. If fatal, a hospice or hospice-at-home may be seen as a blessing and is free, paid for by a combination of NHS and charitable funding.
By contrast, there is no cure for dementia: it is always fatal. People with dementia continue to have access to primary and secondary NHS services for treatment and care of other conditions they have or may develop. However, care that is needed because of their dementia, whether that is residential or at home, is ‘means tested.’ This means that this care must be paid for by the person with dementia until their assets have fallen below a certain threshold (currently £23,250). Their ‘assets’ are what they have in the bank and/or the value of their house if they own one. If residential care is required – and the majority of people in care homes have dementia – the cost is eye-wateringly expensive. As much as £1,400 per week is not unusual for a care home. So, the whole thing is different for a person who has dementia, and for their family, because of the burden and worry about care costs.
The person who has dementia and is still living at home may well be in denial or lack insight and so may refuse to accept “outside” help, which denies that support to their family carers who then can become exhausted. Due to stigma, a carer often hides their burden of care at great social, psychological, physical, and personal financial cost. The carer themself might be a frail and aging spouse; and if they die before the person with dementia, grieving children sometimes inherit this demanding and emotionally complex task. Ultimately, a care home is represented as a failure, not a blessing, by many people. People apologise to me and say, “I’m sorry I couldn’t manage it.”
Inequality of workload among family members is common. It’s worse if siblings challenge care decisions. The main carer might propose a care home and others veto it because they’d “promised it would never happen”. Tensions can rise. The main carer may suggest that they are being sacrificed to preserve family wealth for legacies. Bitter arguments at this time can lead to lifelong animosity. Because I am called in to help families with these difficulties, I might overestimate how often it occurs, but it seems a lot to me. Maybe we need research on this?
Thinking in advance and discussing with family members about powers of attorney, and directions about death and dying, confers hope of managing potential disputes. As a nurse you need to know where to signpost people to this and set an example by doing it yourself. Working together is complicated if any family members are in denial because of differing understanding and knowledge of what dementia is. Family members can have different views about care giving and their respective expected roles. The relationship between parents and adult children may be quite different for each child depending on their birth order, gender and geographical proximity. Sibling relationships are complex. Those in denial may be traumatised by finally appreciating the reality, just when the main carer has no empathy left to offer. Planning ahead can help ward off angry exchanges at this time.
Close carers have lived through years of dealing with changes in behaviour in the person with dementia, bringing alterations in their relationship which others could not see. After a crisis like an acute hospital admission, if other family members take a closer interest and start to involve themselves in decisions, it can cause resentment about them “interfering” rather than be seen as helping. The carer’s physical, psychological and social stress increases as the behavioural and psychological symptoms of dementia worsen and eventually get noticed. This overdue interest is not always seen as supportive but instead it can increase resentment.
What can you do?
They tell me you can only begin to understand or help when you have personal experience, which limits what you can do from a professional standpoint. However, rather than taking the burden on yourself, refer the family on to those organisations that are ready and waiting to help. One thing they can help with – or you can do yourself – is to locate a local dementia carer support group for any dementia carer you think might find this helpful. A local carers’ group provides an outlet for strong feelings that could destroy family relationships and make carers ill. If there is not a local group, you could find a room and get one going. The carers together will do the rest themselves because they are already experts at getting things done.
